Listening to The Real Experts

Originally posted on The E is for Erin:

Image is the front cover of The Real Experts: Readings for Parents of Autistic Children, edited by Michelle Sutton. Front cover blurb reads: “Full of practical advice… a landmark book.” – Steve Silberman.

The Real Experts: Readings for Parents of Autistic Children, a collection of essays written by autistic authors and collected by editor Michelle Sutton, is a challenge for me to review. In my efforts to do so, I read through the entire book twice, once just to enjoy it, and then again to highlight my favorite passages. Even so, when I try to sit down and write a review, all I can seem to come up with a bubble of excitement in my chest and a wordless feeling that is kind of like a whole body fist pump, and then the equivalent of a third grader book review: “This book was AWESOME! You should totally read it!”

But why, Erin…

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When Is It Okay to Chain Your Child to a Bed?


Tw: abuse apologism, child abuse, restraint.

Thank you to Sparrow at Unstrange Mind for writing what needs to be said about this awful case out of Australia.

Originally posted on Unstrange Mind:

chain with padlockThe answer should be obvious, right? Never. Never is it okay to chain your child to a bed and leave him alone, crying out for someone to give him water.

This is what happened in Australia where a mother chained her 16-year-old Autistic son to the bed and left him there alone while she went to the store. If you are upset for that young man, good! You should be! I’m upset on his behalf but I’m also upset and disturbed that, once again, I witness the trend of empathizing with the abusive parent and virtually ignoring everything about the child.

The Facebook administrator for Autism Awareness Australia gave mere lip service to the suffering of the young man and focused most of the spotlight on the mother:

A horrific story…..for everyone involved. Whilst no parent should do this to their child, we can only imagine the desperate situation this…

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Some more thoughts about Julia…

I’m sorry that this is not a proper blog post. This is really just an unedited (except by internal self editor) set of thoughts about the new character Julia, inspired by some things that my fellow autistic friends have posted.

First, let me say that I like Julia as a concept but she’s very one dimensional. It’s obvious that there’s a big “autism parent” influence on her creation, because I am seeing a lot of language that I get from Autism parents rather than language from autistic people. I know that ASAN was involved. But the ways that she’s described isn’t really about a person. It’s about a list of characteristics, of symptoms. Which is really how autistic people are described by neurotypical and non autistic people.

I appreciate that she’s presented in a very age appropriate way. I expected nothing less of Sesame Street. I also know that having a main character, like Elmo, introduce her is typical of Sesame Street. Or like Bob, a human character in this clip, though technically he’s simply providing interpretation for her, not speaking about her as if she weren’t there (though that legitimately does happen to D/deaf and hard of hearing people in real life all the time, being spoken about while still in the room).  It isn’t that I have an issue with Elmo introducing her. It’s that I don’t get a sense of Julia coming through as I did with Samara. I didn’t get a sense of any of her personality beyond a checklist of symptoms.

As for the family stories, I liked parts of them. But I still saw plenty of subtle and not so subtle ableism. It’s subtle to neurotypical people because they might not pick up on it right away. And even autistic people like me might feel something off but not immediately identify what it is that’s off. I want to offer suggestions for Yusenia’s family that involves not restraining her. I have a sensitive head and so does my daughter and I have found a brush that makes it not just bearable or tolerable but simple, easy, fun and not stressful. I want to tell Yesenia’s dad that birthday celebrations don’t have to fit a mold. That it’s okay to not tolerate the stress and noise and there’s other fun things to do with friends that are atypical but fun.

I am a parent of two wonderful autistic kids (one,  who,  like me, also has ADHD). We have very different interests. I haven’t celebrated a birthday in a typical way since I was a child. Even as a child I only had a few birthdays that were celebrated in typical ways (and those were exhausting for me) and many times were considered too young for my actual age. For instance  I went bowling with a few friends and had a sleepover for my 16th birthday. And that’s okay! My aunt took me to my favorite restaurant about six weeks after my birthday (something we planned; I had to wait until I had a day off and could do this without our schedules clashing). We spent about an hour and a half there and it was lovely! I hope I get to do this again this coming year. Things don’t have to be like everyone says they should be to be acceptable. Find your normal.

Autistic adults – where are we in this? Linda was the first deaf character I ever saw on TV. I know there have been other adults with various disabilities on Sesame Street, as well as kids. I want to see an autistic adult on Sesame Street, even if they are nothing like me.

Finally, I think Sesame Street has done some great things with acceptance of all people. They were the first to show me a character who was deaf and a character in a wheelchair. They were the first show to introduce racial and economic diversity to my young self  and I appreciate that. But here’s the thing. Four year olds don’t really need a primer on autism. They need a primer on how do I help my friend have as much fun as I’m having? So a checklist on autism isn’t helpful (which is what I feel like Julia’s app story is, a checklist). Being an accepting person and finding out how to make your friend comfortable and asking that friend, which is not something I see happening with Julia at all (Elmo talks to Abby about Julia ; but they’re not really asking Julia what she wants and needs). I want to know who Julia is. I want to see her personality shine through.

You can do better

Dear Sesame Street,

I grew up watching your show. I was born in 1981 and I have many fond memories of watching Sesame Street with various family members. It made me happy when I saw kids who weren’t abled or were diverse in some way. You made it ok to be different, to think differently, to behave different from the norm and still be ok. For my early childhood anyways, between you and Mr. Rogers, I felt like it was okay to be me.

When I had children, I couldn’t wait to introduce my kids to Sesame Street. They loved it just as much as I did. I’m fairly certain my daughter was watching it long before her second birthday.

So when I saw that you were beginning a new autism initiative, I was tentatively excited. After all, you helped this autistic person accept themselves. Both of my children are also autistic and I hoped that this would be more explicit acceptance of autistic people.

But then I found out that you were partnering with Autism Speaks, which sounds great, but is not. Autism Speaks contributes to the stigma against autistic people in a big way. So I, along with other supporters of Boycott Autism Speaks, tweeted you to let you know how we felt. We left messages on your Facebook page. Yet we received no response. (But I did see a statement from ASAN regarding their involvement, so this is a small somewhat good step) .

This week, you introduced Julia, an autistic Muppet. I think she’s great, and as an autistic person who is not a young boy, having a character who is autistic be a girl is a huge step. I think many of the stories are good, too. It’s fantastic to see an autistic person use AAC and not be shamed for it. It’s great to see a child stim and it be okay. (I was not so pleased with the casual discussion of holding down an autistic kid to brush her hair. That’s all kinds of wrong).

But then I go to the resources on your page and there’s a resource page for parents and teachers and siblings and? Where are the resources for autistic people? Then I realized that this was never for us. This was never so kids like mine could have a character to relate to. This was so that parents could have a character to point to so they can explain autism. This is so that other kids know what to look for to identify  autistic kids. This isn’t really for me or for my kids. This isn’t for people like us. This is for others to explain us.

All of this is so clear when I realize that Julia isn’t a real Muppet. She’s a cartoon. She’s not like Elmo and Abby Cadabby and Rosita and Grover and Telly. She’s just a cartoon. As autistic people, we aren’t often considered real people. We are often calling ourselves unpeople in autistic spaces because that’s how people treat us. There are studies done about whether autistic people are capable of pain, of emotion. And this is only reinforcing that.

With collaboration with Autism Speaks and Autism Daddy, I am not surprised. But I’m hurt.

I don’t expect perfection. But with the person first language (notice my use of identity first language? It’s intentional because most of the autistic community prefers that), the fact that Julia isn’t a real Muppet and the lack of resources for autistic people, I’m a bit miffed. Because you have the ability to do much better. But you chose to center this on non autistic voices, while never responding to the autistic people begging you to do what’s right.

I see that this is a step toward acceptance and understanding. It might help preschool kids accept kids like mine, and is a step toward understanding. But we still have a long way to go.

Benefits of bullying? Nope.

Today, a fellow autistic person noticed an article published on the Autism Daily Newscast’s website and shared on Twitter/Tumblr/Facebook. It is this article (no fear, the link directs you to the do not link page for the article). Please note that there is a huge warning for the entire article with regard to bullying and abuse and abuse apologism and victim blaming and every horrible thing you can think of.

I clicked on the article and knew when I started reading that the author was beyond a shadow of a doubt the same one I’d interacted with about a month ago on Twitter when the same publication (Autism Daily Newscast) published another horrible piece about forced eye contact. I didn’t even have to scroll to the bottom to know that I was correct.



Oh and she also said this, too.



Her article is on the benefits of bullying and I am appalled. Feel free to read it in its entirety, but I am sickened by its content. Essentially, she believes that bullying isn’t ok but if it can’t be prevented (why not? Why can’t it be prevented?), then at least we should look at the benefits of bullying. I find it awful although not surprising that nowhere in the article does she really focus on the victim of the bullying, the autistic kid themselves. No, it’s how can we use this to educate others?

No. Screw that. I have been bullied from the time I was very young. Some in obvious ways (let me throw this baseball at your face and then make it look like an accident) some in more subtle ways (let me pretend to be your friend and then watch cackling as your trust in me as a friend blows up in your face). Some in very abusive ways.

The people who benefited from bullying are the bullies. It’s the kids and adults who chose to humiliate a kid who was slow on the uptake, very trusting, and you ruined that trust. You made it difficult to trust anyone. This is a lifelong struggle.

The adults I told mostly didn’t believe me and the few who did got caught up in red tape in trying to help me. Imagine you’re a 14 year old who has reported that your PE teacher has assaulted you and made inappropriate comments and you’re not believed because he’s a 60+ year old man and you’re just a kid. It’s your word against his and you attend a private religious school and this person is a church elder.

It’s 20 years later and I still have difficulties with those in authority. I still have difficulty speaking up. I have massive issues trusting people. This is the result of bullying and abuse, and it isn’t a benefit.

Karen Kabaki-Sisto, I don’t need your ire and your condescension. I don’t need bullshit articles that tell me that I need to find the silver lining.

And Autism Daily Newscast, I hope you pull this awful article. I hope that you stop publishing someone like this. Stop trying to create “discussion”. Autistic people talk among ourselves about these issues. Maybe talk to us about this instead of publishing self centered, ego maniacal self proclaimed “experts” on autism.


Who, me?

So its been several years since I first wrote my Autism Speaks post, which has quite a funny story behind it. It might never have existed at all had I not typed and re typed the same answers to the same questions over and over again. I’m kind of a researcher by nature and I was posting a lot of responses to people who wondered why I disliked Autism Speaks so much. I had some basic reasons, like “negative stereotypes, awful ad campaigns and pro-cure rhetoric” but knew there was more out there. So I did what came naturally to me –  I looked up their financial records, times they’ve come under fire in the news, read some op-ed pieces and other personalized accounts. So I decided, wow, if I put this all in one place, this could be really useful! People could have a post with all these links to further information about Autism Speaks so they could read more in detail.

My initial post was much smaller than the two that exist today. I’ve edited the first one quite a few times, adding and removing sponsors (yay Panera and Build a Bear! You rock!),  editing broken links etc.

I never would have guessed that so many people would read these two posts, that people would reference me in research papers, that I’d be linked in various op-eds and blogs. I’ve been linked in The Huffington Post, TIME magazine online and a few others and it’s mind boggling. Love Explosions ans The Diary of a Mom have linked me, and they have huge fan bases.

Because when it comes down to it, I’m kind of a nobody. I’m an autistic adult who works in fast food management and who cries at the end of their shifts a lot of the time. Who can’t focus or remember things a lot of the time, who needs medication to make it through the day without breaking down, who has hearing and auditory processing issues, but who does the best that I can because I have two kids counting on me. I’m just me. And I’ve never been really good at anything except maybe condensing information, which is what I’ve done with my Autism Speaks posts.  I’m thrilled and humbled and honored. I’m proud to have written something that matters to people. I get messages on Facebook and Twitter and Tumblr from fellow autistic people who tell me that they felt hopeless and broken until they realized that the negative messages and stereotypes that Autism Speaks and their ilk were perpetuating had a huge impact on the way they felt about themselves. It’s an honor to have been part of that self acceptance.

It doesn’t make it any less surprising.

It’s National Coming Out Day!

First, an apology.  I have neglected this blog and its accompanying Facebook page for far too long and I definitely need to apologize to those loyal readers who have stuck by me regardless.

So today is national coming out day and it’s made me think about identities. A lot of people think that labels are unimportant, that they don’t matter. And while I am all for people just being who they are, I hold a bachelors degree in English and I think words can be important. It seems that people who complain the most about needing to use “made up words” (aren’t all words made up?) are the ones who don’t need words to describe experiences.

I grew up in a religious and conservative household. I often wonder as an adult how much of my identity took so long because it took me that long to find a word that described my experiences or whether it’s because I didn’t understand that anything outside of cis and straight and neurotypical was an option for me. It wasn’t until college that I was pretty sure that I could possibly have attraction to people who were not men. I don’t know that I had the words back then and I know they probably wouldn’t describe me now anyway. If I had known at age 13 that it was ok to like girls the way I was supposed to like boys, what would that when meant for me?

A friend and I were talking last week about being authentic. I thought this might be a good chance for me to really be that. I am Autistic. I’m also queer and maybe a little bit of the specific labels of my gender and sexuality might be tied into the fact that I am neurodivergent, and my experiences are different because of that. I’m fairly gender neutral and have been since childhood (I remember marking both gender markers on a standardized test and wondering why those were all the options when I was around 7). I am attracted to various people of various genders but tend to not often be attracted to people who are definitively male as opposed to something more fluid or something else (female, nonbinary, or “sometimes a dude but not always”). I could go into more explanation but this is feels very personal and I don’t know that I’m quite ready for that much soul baring yet. If you want of use pronouns to refer to me, I prefer they and them. Other gender neutral pronouns are also fine. But yes,Autistic and Queer tend to sum up my feelings in a succinct way. It’s not a complete picture of me, but it’s a jumping off point.

I want the world to be a safe place for people to be who they are. Happy Coming Out Day. Those of you who cannot yet come out, please know that the future will be brighter because your friends and allies will make it so. One day, you won’t have to hide, but for today, there is no shame in keeping yourself safe and alive.